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Eileen71 07-27-2013 03:03 AM

My 6 year old son has CMTC.
I am new on here. My husband and I have been dealing with this for 6 years with absolutely no help with questions about CMTC. We have gone to the University of Chicago to get as much information as we could but this was in his first years, but after a few years where to you go from there, except the yearly appointments with Derm, Ortho, cardio and several others. I can not tell you how happy I am to find this. Yes, we have been to all the Doctor's but it always seems I am explaining it to them. At 6 years old there is about a three inch difference in leg length, and one leg and foot is 2 sizes larger than the other leg. I cry every time he gets his new orthotics. I'm told he can not do anything about this until about 14 years of age. At the age of 2 he went to Children's hospital in Cincinnati, where he was seen by 7 specialist. They informed me at that time that he had no heart issues. They were wrong. At 4 he had heart surgery. This was a success. He is much slower with his learning then the average child. I would love to meet some other parents that are facing these same issues and find out what if anything else I can do and just have some more support. Thank you

missy 07-27-2013 03:27 PM

Hi and welcome!

Try to get in touch with a user here called abatie. She's the one you need to talk to. She's in a very similar situation.


Eileen71 07-29-2013 03:25 AM

Thanks You

missy 07-29-2013 02:29 PM

If you can't get in touch with her, let me know and I'll try to find her and email her on your behalf.


abatie 09-14-2013 02:09 PM

Sorry I haven't been around here for a very long! Eileen71 I can understand your situation. Our daughter who is four has CMTC. She does have a significant limb length discrepency and she also had heart issues. Becca's heart issues did resolve on their own (doctor's say it was a miracle-there was no way holes the size she had she have resolved on there own). If you would like to e-mail me please feel free as I don't check in here very often because there just isn't a lot happening on this thread. I am pretty active on Facebook with several other mommies. My e-mail is if you need to share this with other new members or you need me to get on here and respond you could also send me an e-mail). With four kids and a full time job life gets busy but if I know someone needs help I am here.-Alison

missy 09-14-2013 03:34 PM


Good to see you! Hope you're hanging in there!


abatie 09-14-2013 04:18 PM

Hi Missy!

I have been hanging in there and busy with life. Becca started preschool this fall and it has been going well so far. I took in Buddy Booby's Birthmark and the teacher read it to the class and did a lesson on accepting people with differences. We talked with Becca at length about how to deal with comments people might make and she told us, "Who cares!".

I have been really involved with CMTC through the US organization and the international organization. I now do the translations for the website from Dutch to English and it is giving me that purpose I was looking for. I often forget to check in here! :( Hoping all is well with you!-Alison

missy 09-15-2013 04:00 AM


All of that sounds awesome! You're an inspiration!

Hug Becca for us.

Missy 10-13-2015 07:09 PM

Hi - My son is 14 months and recently diagnosed with CMTC, although we are not certain the diagnosis is correct. As of now, his affected leg, the left leg, is 1 centimeter longer than the right leg. The markings on his left leg are very faint pink (hardly noticeable). Other than that, he is healthy and happy. I am trying to understand what this means and am wondering why your children would have learning issues and heart issues. I have not seen any link between CMTC and those issues? Were you told that there is a link? Or could something else be the cause? We are in Tampa, Florida. Thank you so much for any advice/guidance! Jen

abatie 10-14-2015 12:53 AM

First off every case of CMTC is different and because it is so rare there is no way to know what is related to the CMTC and what isn't. Becca's heart issues are not known to be related to her CMTC (she is actually the only case we are aware of with a heart issue in addition to CMTC). Learning issues are present in other children with CMTC but I also can't say that Becca's learning issues are related. She was young in her class and may have needed to repeat K even if she hadn't had all the other complications in life. She is doing much better now but does have some motor issues (fine and gross) and they are related to the CMTC as she has less muscle on her right side.
I hope this helps.

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